What is Inflammatory Bowel Disease?

Inflammatory bowel disease, or IBD, is when there is inflammation, or swelling, in the gastrointestinal (GI) tract and a lifelong immune response.

IBD causes the body and immune system to think that food, bacteria and other needed things in the intestine are not supposed to be there. With this, the body attacks the cells of the bowels, causing inflammation that does not easily go away.

IBD affects both men and women.

IBD is often found in people in their late teens and 20s, though it can be found at any age.

Symptoms of IBD can differ from person to person and depend on the type of inflammatory bowel disease.

There are two main types of inflammatory bowel disease: ulcerative colitis and Crohn’s disease.

Ulcerative colitis (UC)

Inflammation in the colon or rectum

Can cause:

Diarrhea (loose stool)

Cramps

Rectal bleeding

Crohn’s disease (CD):

Inflammation or ulceration throughout the GI tract

Can cause:

Cramps/belly pain (often in the lower right side)

Diarrhea

Weight loss

Bleeding

Both Crohn’s disease and ulcerative colitis are illnesses with times of remission (when you feel well) and relapse (when you feel ill).

There are many types of treatment plans that your doctor can order to control the symptoms of IBD, and each of these has specific actions and side effects.

About 15 to 30 percent of patients with IBD have a family member with the disease. There is research underway to find out if a certain gene or a group of genes makes a person more likely to get IBD.

There is little proof that stress causes IBD. As with other illnesses, stress may make symptoms worse. Stress management might be suggested.

Treatments for IBD often include medications, nutrition, emotional support or surgery, based on the type of IBD.

While what you eat does not cause IBD, foods can cause or worsen symptoms when the disease is active.

Your doctor may do a nutritional assessment to find out if you are taking in enough calories, vitamins and minerals.

Coping With IBD

Though IBD is a long-term health issue that has times of remission and relapse, most people have a normal life span and a good quality of life.

For those who have chronic and continuing symptoms, here are a few tips to try:

Know your body and how IBD affects you.

Learn to care for yourself — have control over those things you can control.

Build a support system that works for you: family, friends and support groups.

Additional Resources

For more details on testing, treatment and coping, please visit the Crohn’s disease and ulcerative colitis materials here.

Pregnancy and IBD

Top Questions from Women

Is it safe for a woman with IBD to get pregnant?

For any woman, with or without IBD, pregnancy results in a lot of changes that can be linked to risks.

The fact that you have IBD does not make it any more “unsafe” to become pregnant.

Of course, getting pregnant while sick with active symptoms can make you more sick, and thus pregnancy should be thought about only when your disease is in remission (no or very few symptoms).

Will having IBD make it harder to get pregnant?

Having ulcerative colitis does not make it harder to get pregnant.

Having Crohn’s disease that involves most of your large bowel does appear to make it harder to get pregnant.

Having surgery for any type of IBD can make it harder to get pregnant, mainly because the scar tissue in the gut and pelvis can block the fallopian tubes.

Data shows that women with IBD who need in vitro fertilization (IVF) to get pregnant do have lower rates of success than women without IBD going through the same process.

Will IBD cause the baby to have a birth defect?

There is no evidence that having IBD or using the medications to treat IBD while pregnant are linked with a higher risk of birth defects.

Will my child get IBD?

While there are genes that have been found to be linked with IBD (there are now over 107 of them), it is not a genetic disease.

The risk of a child getting IBD from a parent who has IBD is about 5 to 7 percent.

If both parents have IBD, then the risk is about 35 percent.

Will my disease flare or get better if I get pregnant?

Every pregnancy is different. Some pregnancies will result in a disease flare for IBD patients; others with IBD feel better when pregnant.

If you are in remission (no or very few symptoms) when you get pregnant, there is no increased risk for developing a flare than if you weren’t pregnant.

If you have active symptoms when you get pregnant, then you have a third of a chance of getting better, a third of a chance of getting worse and a third of a chance of staying the same.

How do I get treated if I have a flare during pregnancy?

If you are on no medications when you flare, you will usually just go back on what you were taking prior to getting pregnant.

If that does not work, then stronger therapy, like steroids, are used to control active disease.

It is very important to get active inflammation under control quickly during a pregnancy so that the baby is not affected.

You can even start a biologic during pregnancy to control disease, if needed.

Do I stop or continue my medications during pregnancy?

There are only two medications that treat IBD that have to be stopped during pregnancy — methotrexate and thalidomide.

All other IBD medications have been shown to actually protect against a bad outcome because they control active inflammation and disease.

Biologics cross the placenta (except for certolizumab (Cimzia®)), but there is no evidence that this causes any bad outcomes in the baby after birth.

Can I breastfeed on medication?

Women do not have to stop their IBD medications to nurse.

The only exception is if they are taking antibiotics.

Do I have to have a caesarean section (C-section)?

The only time that a C-section would be needed because of IBD is if you have Crohn’s disease and a perianal fistula for which you are getting treatment.

Women with a history of a J-pouch surgery for ulcerative colitis may need to discuss with their surgeon whether a C-section is appropriate, but most surgeons these days are alright with a woman delivering vaginally.

What should I know once the baby is born?

If a mother is using any biologic that crosses the placenta, the infant should not get vaccinated with any live virus vaccines for six months after birth.

Top Questions from Men Whose Partners are Trying to Get Pregnant

Should I stop my azathioprine to father children?

Men do not have to stop their medication to father children.

While there was an early study suggesting that azathioprine in men may be linked with a higher risk of bad birth outcomes, multiple studies since then have not shown this to be true.

Should I stop my infliximab to father children?

Men do not have to stop their medication to father children.

Infliximab has not been shown to adversely affect the quality and health of sperm.

Crohn's Disease?

Crohn’s disease is a type of inflammatory bowel disease (IBD).

It causes inflammation (pain and swelling) in the gastrointestinal (GI) tract, also called the digestive system.

Inflammation from Crohn’s disease can make it hard for patients to take in nutrients during digestion.

While there is no cure for Crohn’s disease, there are treatments that can help.

Crohn’s disease can have times of remission (time when you feel well) and relapse (when you feel ill).

The most common part of the body affected is the lower part of the small intestine, called the ileum , and the first part of the colon. However, Crohn’s disease can show up in any part of the GI tract, from the mouth to the anus.

Crohn’s disease can be found in people of any age but is often found between ages 13 and 30.

Smoking can raise the chances of getting Crohn’s disease.

Right now, the cause of Crohn’s disease is not fully known. Experts think a few things could play a role in getting Crohn’s disease, such as:

Autoimmune reaction — Crohn’s disease is thought to be an autoimmune health issue, meaning the body’s immune system thinks food and other things are not supposed to be there. With this, the body attacks your gut, causing inflammation.

Genes — Crohn’s disease tends to run in families.

The environment — Some studies show certain things, such as the use of nonsteroidal anti-inflammatory drugs (NSAIDs), antibiotics, oral contraceptives or a high-fat diet may slightly raise chances of getting Crohn’s disease.

Stress or certain foods do not cause Crohn’s disease. However, high stress and some foods may worsen symptoms.

Symptoms of Crohn's Disease

The symptoms of Crohn’s disease can vary from person to person , based on where the disease is in the body and how bad the inflammation is.

The most common symptoms of Crohn’s disease are:

Belly pain and cramps, often in the lower right side.

Diarrhea (loose stool).

Weight loss.

Rectal bleeding.

Fever.

Feeling tired or weak.

Loss of appetite.

Anemia (low iron in your blood, which can make you feel weak and tired).

Joint pain.

Changes in skin (red bumps that are tender when touched).

Eye irritation.

Delayed development and stunted growth in children who have the disease.

Keep of track of any symptoms, how often you have them and how bad they are before seeing your doctor. Try the MyGIHealth® app to stay organized.

Getting Tested for Crohn's Disease

There are many tests your gastroenterologist can do to find out if you have Crohn’s disease. First, he or she will take your past health info, listen to your symptoms, and do an exam to feel and listen to your belly. No one test makes the diagnosis, but testing is used to confirm the gastroenterologist’s clinical suspicion that Crohn’s disease is causing symptoms.

Blood Tests

Your doctor will look for anemia (low iron in your blood, which can make you feel weak and tired), caused by bleeding.

Blood tests can show signs of inflammation or infection somewhere in the body, like a high white blood cell count and other markers of inflammation.

Blood tests can be done at your doctor’s office or in a lab.

Stool Tests

Stool tests are done to make sure there aren’t other GI health problems, such as infection, causing symptoms.

Stool tests can show if there is bleeding in the intestines and may confirm if inflammation is present.

Your doctor will give you a special holder for the stool, which is then returned to your doctor or a lab.

The below tests are done in your doctor’s office, an outpatient center or a hospital. These tests can be used to find Crohn’s disease or to rule out other health issues, such as ulcerative colitis, irritable bowel syndrome (IBS), diverticulitis or cancer.

You will be given medicine to make you feel relaxed and sleepy during this test.

A colonoscopy involves looking at the colon from inside the body using a long, thin (about the width of your little finger), flexible tube with a tiny camera on the end, through which the doctor can view your whole colon and rectum for inflammation, swollen tissue, ulcers or polyps (mushroom-like or flat growths on the inside wall of the colon or rectum).

If the doctor thinks it might be Crohn’s disease, he or she will also do a biopsy (taking a small piece of tissue to look at under the microscope) during the colonoscopy. This is not something you will be

able to feel.

You might feel some pressure during the exam and there may be some cramping afterward, but you most likely will not feel a thing during this test.

You will need to “prep” before this test to clean out your bowel so your doctor can see clearly.

Follow the instructions given to you by your doctor to do this.

Since you will be given medicine to make you sleepy, you will need someone to take you home and you won’t be able to go to work that day. The next day, most people go back their usual activities.

An endoscopy or enteroscopy is done to look inside your gastrointestinal (GI) tract to see if there is inflammation or ulcers and to get a small piece of the tissue (biopsy) from your small intestine to see if Crohn’s disease is present.

You will be given medicine to block pain and make you feel relaxed and sleepy, so you won’t feel much during the test.

During the endoscopy, your gastroenterologist will use a long, thin (about the width of your little finger), flexible tube with a tiny camera on the end to look inside.

The tube is passed through the mouth into the small intestine as your gastroenterologist does a careful exam.

A capsule endoscopy is a way for your doctor to see inside your GI tract and look at the lining of the small intestine.

Unlike an upper GI endoscopy or a colonoscopy, this test uses a camera inside a pill-like capsule.

You will swallow the pill (which is just over 1-inch long and less than ½-inch wide) at your doctor’s office.

Once swallowed, it will travel through your GI tract, sending images to a special device for your doctor to review.

You will be awake and active during this test, though you will not feel the capsule. The capsule will leave your body naturally through a bowel movement.

Computerized Tomography (CT) Scan and MRI Enterography

These tests use both X-rays and computer technology to make clear images for your doctor to see your GI tract.

You will need to drink a mixture, which helps your doctor see your GI tract more clearly on the images. You may also be injected with a dye to help, as well.

You will not be put to sleep for this test.

This test can find Crohn’s disease and complications from the disease.

Upper Gastrointestinal (GI) and Small Bowel Series

This test uses X-rays to look at your upper GI tract.

During this test, you will sit or stand in front of an X-ray machine and drink a thick liquid called barium. The barium will coat your esophagus (the tube that links your mouth and stomach), stomach and small intestine so your doctor can see them more clearly in the images.

You will not be put to sleep for this test.

You should not eat or drink before this test.

This test may cause bloating (swelling) or upset belly for a short time. The barium may cause your stool to be white or light-colored. You may be instructed to take a laxative after the test to make sure that the barium is passed and does not cause severe constipation (hard stool or trouble passing stool).

_ Talk to your doctor about which test is best for you. Your doctor will give you specific instructions for how to get ready for your test for Crohn’s disease. _

Newly Diagnosed with Crohn's Disease

Questions to Ask Your Doctor

How often do I need to see a gastroenterologist?

How often do I need to undergo testing?

What are my risks for colon cancer?

Are there symptoms that should cause worry? If so, what are they?

If you don’t know something at any point, ask for more (or clearer) information!

For some, hearing that they have Crohn’s disease is a relief, a reason for symptoms and a light at the end of the tunnel. For others, it can be scary and daunting. Many will have a mix of feelings. All of this is completely normal.

No matter what you may be feeling upon hearing you have Crohn’s disease, it is of great value to know that you are not alone and that many places have support groups, both in-person and online, for people all ages with Crohn’s disease that can be very helpful. Talk to your doctor about support groups at the hospital or do your own research to get involved with the Crohn’s disease (and inflammatory bowel disease [IBD]) community.

If you are overwhelmed by your new diagnosis, don’t wait to reach out to a mental health expert to talk through the changes. Relaxation techniques, such as yoga, meditation or mindfulness, may be very helpful.

Working together with your health-care team, you can make a treatment plan just for you, to help control your symptoms and put you in charge of your Crohn’s disease.

Treatment for Crohn's Disease - Nutrition and Medication

While there is no cure for Crohn’s disease, there are a number of options to help treat it. The goals of treatment are to:

Control inflammation, or swelling.

Ease symptoms, like pain, diarrhea (loose stool) and bleeding.

Fix nutrition deficiencies, if needed.

Treatment will depend on where the disease is and the severity of the disease, past complications, and response to earlier treatments. Remember, everyone experiences symptoms of Crohn’s disease differently. If one treatment doesn’t work as well, there are other options. Just be sure to be in touch with your doctor regularly.

Medications

The goals of using medications are to start or keep up remission (no symptoms) and to improve quality of life. Each person reacts a little bit differently to each drug and many need a combination of drugs. While some of them have side effects, the benefits and symptom relief often outweigh those drawbacks.

Aminosalicylates

Help control inflammation, especially in those who are newly diagnosed with mild symptoms.

Sometimes these drugs are called 5-ASA’s, which stands for 5-aminosalyciclic acid.

Examples include:

Balsalazide.

Mesalamine.

Olsalazine.

Sulfasalazine.

Possible side effects include:

Belly pain.

Diarrhea (loose stool).

Headaches.

Heartburn.

Nausea and throwing up.

Corticosteroids

These drugs can be very helpful right away. They help lessen inflammation quickly.

These are often given in large doses when the disease is at its worst, then lowered as symptoms get under control. They are given to people with moderate to severe symptoms.

These drugs are not given for long-term use.

Examples include:

Prednisone.

Budesonide.

Hydrocortisone.

Methylprednisolone.

Possible side effects include:

Weight gain.

Acne.

Facial hair.

Mood swings.

Bone mass loss.

Greater risk of infection.

Hypertension.

High blood sugar (diabetes).

Stopping these drugs suddenly could cause withdrawal symptoms, so your doctor will have you lower the dose slowly.

Immunomodulators

Immunomodulators, or immunosuppressive agents, block the immune reaction that leads to inflammation, lessening inflammation in the gastrointestinal (GI) tract.

These drugs can take up to three months to start working, so they are often used with other medicines until that time.

These are given to help people go into remission or given to people who have not responded to other treatments.

Examples include:

6-mercaptopurine (6-MP).

Methotrexate.

Azathioprine.

Cyclosporine (only for people with severe Crohn’s disease, as it comes with some risky side effects).

Possible side effects include:

Nausea or throwing up.

Diarrhea (loose stool).

Less able to fight infections (from low white blood cell count).

Fatigue or feeling tired.

Pancreatitis.

Biologic Treatments

Your immune system makes a protein called tumor necrosis factor (TNF), which can attack healthy cells in your body and can cause inflammation and damage. Biologic drugs, also called anti-TNF blockers, help block the action of the TNF protein.

These drugs can lessen inflammation and quickly bring on remission of Crohn’s disease.

These drugs are used in people with moderate to severe Crohn’s disease who do not respond to other treatments.
sn- These drugs are often given by either injection or infusion every six to eight weeks, based on what the patient needs.

These drugs tend to cost more, so talk to your health plan before starting.

Examples include:

Infliximab.

Adalimumab.

Certolizumab.

Vedolizumab.

Natalizumab.

Possible side effects include:

Toxic/allergic reaction.

Itching or bruising at injection or infusion site.

Greater chance of getting infections (especially tuberculosis).

Greater chance of lymphoma.

Biosimilar Treatments

There is a new type of biologic treatment, known as biosimilar products.

Biosimilars have been approved by the U.S. Food and Drug Administration (FDA) to use as treatment in place of biologic drugs.

They are highly similar to standard biologic drugs and have no clinically meaningful differences.

Your doctor can prescribe a biosimilar in place of a biologic drug; however, your pharmacist cannot change you from a biologic drug to a biosimilar without your doctor’s approval.

Overall, biosimilar products should produce the same results as a standard biologic drug. Talk to your doctor about more information and what is best for you to treat your Crohn’s disease.

Examples include:

Infliximab-dyyb.

Possible side effects include:

Same as biologic drugs.

Other Medications

Acetaminophen can be used for mild pain.

People with Crohn’s disease should not take ibuprofen, aspirin or naproxen as they can make symptoms worse or cause GI bleeding.

Antibiotics are given to prevent or treat infections and fistulas (a link between two body parts that should not be there, such as between two organs; they can form from infection, inflammation or surgery).

Loperamide is given to help slow or stop severe diarrhea. It should only be taken for short cycles of time.

For more information on drug options, click here for the patient companion to the AGA Clinical Guidelines on the use of drugs in patients with Crohn’s disease.

Nutrition Supplementation

While no foods cause Crohn’s disease, good nutrition is still very important and certain changes in diet could help lessen symptoms. Speak to your doctor or a registered dietitian (RD) about what nutrition steps would be best for you.

Some nutrition options for people with Crohn’s disease are:

Staying away from carbonated drinks.

Avoiding popcorn, raw veggies, nuts and other high-fiber foods.

Drinking more liquids (not alcohol).

Eating smaller meals more often.

Keeping a food journal to track symptoms.

Using a nutrition supplement or vitamin.

There are times when symptoms are so bad that any food can cause harm. If this happens, you doctor may suggest bowel rest. Bowel rest means either only consuming clear liquids (no solid food) or not consuming anything by mouth at all. If your doctor puts you on bowel rest, you will get nutrition through an IV. Some people stay in the hospital during bowel rest, but others get the treatment at home. During this time, the intestines are able to heal.

Treatment for Crohn's Disease - Surgery

Medication helps many patients with Crohn’s disease, but for some, it is not enough to help relieve symptoms. Up to 85 percent of patients with Crohn’s disease will need surgery at some point. Surgery is not a cure, though it can help ease symptoms or treat any complications. Surgery is often a last resort and used when a patient has:

Bowel block.

Bleeding that won’t stop.

Fistulas.

Abscess.

Symptoms that don’t get better with medication.

There are a few types of surgery that can be done for Crohn’s disease. A surgeon will work with you and your gastroenterologist to figure out if you need surgery and which surgery would be best.

For any surgery, you will get general anesthesia (be put totally to sleep) and will be in the hospital for up to a week after. It can take up to six weeks for patients to fully heal after surgery.

Small Bowel Resection

This surgery is done to remove part of the small bowel.

This is done when there is a block or severe disease in the small bowel that does not get better from medicine.

The surgeon will take out the part of the bowel and reconnect the healthy ends of the bowel.

This surgery can be done laparoscopically or as an open surgery.

Laparoscopic — Uses a few small, ½-inch incisions in the belly to put in a thin tube with a camera on the end. Looking at the images from the camera, the surgeon put tools through the small incisions to complete the surgery.

Open — Uses one 6-inch incision in the belly.

Subtotal Colectomy

This surgery is sometimes called a large bowel resection, meaning it removes part of the large bowel.

This is done when there is a block, a fistula or severe disease in the large bowel that does not get better from medicine. The surgeon will take out the part of the bowel and reconnect the healthy ends of the bowel.

This surgery can be done laparoscopically or as an open surgery.

Laparoscopic — Uses a few small, ½-inch incisions in the belly to put in a thin tube with a camera on the end. Looking at the images from the camera, the surgeon puts tools through the small incisions to complete the surgery.

Open — Uses one 6-inch incision in the belly.

Proctocolectomy and Ileostomy

This surgery is done to take out the whole large bowel and rectum.

An ileostomy is a small hole in the belly. The last part of the small bowel, the ileum, ends at this hole outside of the body. A removable, external pouch (ostomy pouch) is connected to the hole to collect the content of your intestines (stool). The ileostomy may be temporary or permanent.

With total removal of the colon and rectum (proctocolectomy), you will have the ostomy for the rest of your life.

Things to Be Aware Of

Taking your medicine and staying well hydrated and nourished can help keep Crohn’s disease under control. Sometimes, though, complications can happen. Often, with Crohn’s disease, these issues will need medical attention.

Bowel Block

A block or a stricture (when the bowel is very narrow in one spot) can happen. Crohn’s disease can thicken the bowel wall with swelling or scar tissue, causing the block or stricture.

A block can stop food or stool from passing through the bowel as it is supposed to.

A block can sometimes be treated with medicine, but often needs surgery.

Fistulas

A fistula is a link (or tunnel) between two body parts that should not be there, such as between two organs. They can form from infection, inflammation or surgery.

Fistulas often form near the anus and rectum in patients with Crohn’s disease.

Fistulas can heal with medicine or changes in diet, but some may need surgery.

Malnutrition

If Crohn’s disease is not under control, it can stop the body from getting the vitamins, minerals and nutrients it needs.

This can be treated with IV fluids or feeding tubes to help patients get the nutrition they need while they work with their doctors to get the disease under control.

Inflammation in the Body

Inflammation from Crohn’s disease is often found in the bowel or along the gastrointestinal (GI) tract, but sometimes the immune system causes inflammation in other places like:

Joints.

Eyes.

Skin.

Medicine to help with pain and to help get inflammation under control are used to treat this.

Ulcers

Ulcers are open sores.

Ulcers can form from inflammation anywhere on the GI tract:

Mouth.

Bowels.

Anus.

Perineum (place between the anus and the sex organs).

Medicines for Crohn’s disease often treat ulcers, as well.

Anal Fissures

Anal fissures are small tears or cuts found in the anus.

They may cause itching, pain or bleeding.

Often, fissures get better with medicine, ointments, warm baths and changes in diet.

If you think you are having one of these complications of Crohn’s disease, let your doctor know right away.